“The best thing about human beings is that they stack so neatly.”
It's not all autism all the time for me. It can't be. It just can't be. Sometimes, I want to do things that are so far removed for autism and parenting and well...responsibilities in general, that I can barely stand it. More often than I'd like to admit I do gloriously selfish things like book a ninety minute massage and spend money I don't have on books I don't have time to read. Sometimes, only sometimes, I buy the fifteen dollar bottle of wine because it feels like a treat and on a very rare occasion, I buy the fifteen dollar wine, an obscenely sized Toblerone and a brand new book and I enjoy them all at the same time. It feels criminal and I like it that way.
Tonight, my indulgence of choice will be as many episodes of House of Cards as I can fit into an evening (It's back on Netflix today, you know) and that fifteen dollar bottle of wine. Netflix was kind enough to send me a gift card to buy $50 worth of ribs to enjoy during the premier. If you know my man Frank Underwood, you'll know why. I'm more of a gourmet chocolate kind of girl so I'll let my husband enjoy those ribs but if all goes as planned, in a matter of hours, we will be home enjoying the antics of one politically evil motherfucker and his painfully complex wife with a bottle of wine and a roaring fire.
So, tonight, I will be visiting that world. One where autism doesn't exist and people still smoke cigarettes right on television like it doesn't even matter that they kill you--A world where everyone one screws everyone and bad people do things so vile that you can't help but be impressed. A world where I only have to participate from my couch and that's just fine with me. Can you imagine a world like that? I'd never want to live there but I sure do love to visit now and then.
If the words enter, if the alignment of mood, environment and focus are such that she can hear your words, at all, and allow them entrance into a brain that defies her--she must then:
PROCESS THOSE WORDS
Your words will scatter when they enter her brain and that brain will resist her commands to organize them. Her brain will 'wiggle', as she puts it, to the point where she must jump and spin to ease the discomfort. If she has the strength left after negotiating a days worth of language she may be able to harness those words into appropriate boxes and decipher your request. She must then:
FORM A RESPONSE
Now, she is searching that disobedient brain of hers for an appropriate response. If she is lucky she has read your expression correctly. She wants to form a coherent sentence. She wants the words to come out in the proper order at the appropriate point in the conversation. She wants to be confident in her response. Her brain is insolent and she's held confidence in her response before only to see confusion on your face. She boldly forms her reply. She must then:
GAUGE YOUR REACTION
If she manages to look you in the eye. If interpreting the swarm of visual information that is your face does not overwhelm her she may be able to deduce your reaction. Your expression is likely confusing; like hieroglyphs to the novice archeologist. What does it mean? She looks for clues. She is so tired now. Her brain begins to wiggle more fiercely. She rises up on her toes for relief. She must then:
Away, alone, among comfortingly predicable situations. She'll find her peace there; until we ask her to do it all again.
But your baby was born after mine? I remember because I was snuggling my little blonde bundle when I heard the news. I was so happy for you. I was just coming to the end, or so I hoped, of the sleepless nights phase of child-rearing and I was feeling a little accomplished. My little doll would soon take her first steps; speak her first words, and when those things happened I would have all kinds of good advice for the moms of children coming up behind her. It would be my pleasure to share my insight. I waited.
Then one day you called to tell me your little one had said his first word. 'Mama', he said. You were bursting with pride and as I listened to you detail the moment it happened I imagined you writing it down in his baby book later that night with a satisfied smile on your face. I told you how happy I was for you. What an occasion it was. I made excuses to let you go and then I cried. Kate hadn't spoken yet. Hadn't uttered a sound. I cried with selfish disregard for anyone and when I was done crying, I went to my sleeping infant and said:
In your own time, baby.
Soon, I would see a number of your social media posts detailing your little one's triumphs, in true new-parent fashion. How clever he was, speaking in sentences now. I watched and re-watched the videos of him and listened as you clapped and cheered behind the recording iPhone as you documented one landmark or another. I watched your photos and videos garner likes and comments of other proud and excited parents. It was all going as planned for you. I was so happy for you, and then I cried. I cried with abandon and bitterness, and when I was done crying I went to my sleeping baby and said:
In your own time, baby.
You don't call, anymore; or is it that I don't call, anymore? It doesn't matter. I know I have been a less than stellar friend. I struggled to continue with feigning excitement because my reality was overwhelming me at times. I wasn't strong or fair and for that I am sorry. The internet had been bombarding me with evidence of talking babies and absurdly young potty-trained children and I was scared. I was so scared and then I cried. I cried with resolve and intention and then when I was done crying I went to my sleeping toddler and said:
In your own time, baby.
Eventually, I would learn the specifics of why my sweet baby was not meeting the milestones of so many babies that came after her. It had a name and knowing that name would help. It was called autism. Autism would make those milestones into mountains and fruitless comparisons would become more trouble than they were worth. We would travel a different path and we would begin to climb those mountains togethers and ultimately we would bash right through the mountains and leap some altogether and then I cried. I cried with pride and delight and then I went to my sleeping child and said:
In your own time, baby.
Finally, I would see fit to share these breakthroughs, these turning points, on the same social media outlets that has been so cruel for so long and when I did, you, you who are reading this now, responded with such enthusiasm and devotion that I cried. I cried with wonder and satisfaction and then I went to my sleeping baby and said:
You did it in your own time, baby.
Personally, I'd rather be walking though an art gallery than pretty much anywhere else on earth. I, admittedly, barely have a foothold on the art world, with my occasional visits to cities that house great art, but I revel in the galleries no matter how sophomoric my knowledge. I'm happy there. Whether it be the primitive sketches of early man or the stark simplicity of modern art (and everything in between) it reminds me that there are so many ways to experience the world; so many ways to communicate intention and feeling.
Recently, during a visit to New York, I was admiring the architecture of Frank Gehry, while jammed into the top of a double-decker tour bus surveying the city. The tower itself gave me chills. The idea of the penthouse that sat atop that tower could make me weep. I realized I was holding my breath as I stared at Gehry's contribution to the New York skyline when I overheard the following from a gentleman behind me: "I just don't get it. It seems wrong somehow. What's the point of making something so bizarre. It's kind of offensive?" His seatmate laughed, a vacuous laugh that told me she had little idea what he was talking about and I turned because I needed to see who could have such contempt for a piece of art. I felt annoyed, indignant, even. I realize art is subjective but this man had used the phrase 'offensive' to describe someone's attempt to communicate using architecture. I wanted to say that Gehry's building was a masterpiece, a goddamn triumph, but instead I took note of the pair's matching bored expressions as they scrolled their phones rather than take in the New York skyline and instead I turned back around. It was none of my business, right?
I began to think about Kate because looking at the world's most extraordinary art often brings that little spitfire to mind. I thought of my daughter Kate, who has autism, and all the children like her and how interacting with them can be like interacting with the world's most profound works of art. They exhibit various and intricate forms of communication, too. They can stun you with beauty and uniqueness and they can confound you with devastation and complexity. Some of you will look at them and think "I will work hard to understand because I can see there is undeniable beauty here", and some will look at them and think "I just don't get it. It seems wrong somehow."
While I don't deny there are many dark days in the world of autism I am slowing learning to appreciate it for its asymmetry. Much like Gehry's work, which has been described as 'ill-formed, misshapen and undeveloped', autism is often misrepresented and misunderstood.
It's time we realized that understanding autism is more of an art than a science.
I'm breaking all of my writing 'rules'. I've been struggling to produce anything worthwhile lately and I decided to try something new. I'm sitting at Starbucks. It's 7:05pm. I have a notebook with me. I have doubts about trying to record my thoughts here, in this way, but I've seen so many people do it, that I am willing to give it a go.
I stand out. Everyone looks so comfortable here, so hidden behind a Macbook, so...sober. Maybe, this wasn't such a good idea. I miss my chair, my computer and my drink. For now, a lemonade will do.
Okay, pen to paper, and go. I stare at the eleven dollar notebook I just purchased at the Indigo connected to the Starbucks. It's pretty but it has the world 'believe' embossed all over it. It doesn't suit me. My book should say--'bitter', or 'bored'. Nonetheless, I've committed to writing something in this book while I sit here.
Fuck, I forgot to bring a pen.
There, it's a sign. I should go home; I don't belong here. But, I just spent eleven dollars on this fucking book. I scan the restaurant. Ear buds in everyone's ears. Too awkward to ask for a pen. I see the bored barista at the cash. She's picking at her fingers. I am slightly revolted. I step up and ask her if I can borrow a pen.
Sure, keep it. (She doesn't look up but nods towards a cup full of pens. Her finger-picking consuming her. I can see now she is picking old black nail polish from her nails)
No, I'll return it. (Or something like that)
Keep it, we have lots. (Still picking, picking, picking)
No, I'll bring it back when I am done. (She looks up now, challenged, and drops her hands)
It's not a big deal. Seriously, keep it. (Now she has tone in her voice)
Why is she arguing with me? Or am I arguing with her? I don't need this shit. I sit down again fully intending to return her goddamn pen.
Okay, time to get writing. I return to my seat. I stare at the page. I wonder what everyone else is doing here. There is a curly-haired, serious-looking business lady, with two mobile phones resting on the table beside her, typing on her laptop like she's mad at it. She has a briefcase. I wonder what's in it? What do people carry in briefcases, now? Are her files not stored on her computer? Maybe, she has gold bricks in there. Maybe, it's for effect.
Behind her, is a thirty-something, super casually-dressed man. He is leaning far back in his chair with his legs stretched out under the table. His arms are crossed but he is staring at the screen of his laptop. I wonder what he is watching? I try and lean forward to get a glimpse. I can't see. He's wearing a concert t-shirt but the band seems rather obscure and a bit scary and the back of his hand is covered in a spider-web tattoo, so I am guessing I won't be interested in whatever he is watching.
Back to work.
I look back down at my page. I've been unknowingly doodling while I stare at the other patrons. I've doodled a number of tornado-looking designs and one large dollar sign. What could that mean?
I look at the clock. How long have I been here. It reads 7:17. How do people do this? My lemonade is watery now and I want to go home.
Never one to persevere, I raise and gather my things and move quickly to my car. I'm twenty-five minutes away from my chair, my computer and my drink. On the way out I glance at the screen of the guy with the tattoo. He's watching concert footage. Predictable and boring, like me.
I'm not meant to write at Starbucks with its violence-inducing ambient music and its 'other people'. It's not my process. I have a process. At least I've realized this. I want to be alone. I drive, please with my decision to abort the mission.
It's not until I am just minutes from home that I realize I kept the fucking pen.
This time of year is hard on many of us. Some of us are buried in four feet of snow and the rest of you think I am exaggerating about that fact. Some of us are avoiding the mailbox because the bills from an indulgent Christmas season are rolling in and the rest of you are...well, we are probably all doing that. Some of us are feeling like shitty parents because our kids are acting out and they get too much screen time and they hardly eat and we've missed four appointments this month and the rest of you are...well, liars.
Either way, many of us are tired. Tired of being tired. So tired that some of us can barely craft this post. So, I would like to propose an idea. Let's take an evening. Just you guys and me. We'll wait until the kids are asleep and we'll raise a glass. We'll raise a glass to all of it. Let's drink to everything that sucks (that's the kiss my ass part) and everything that doesn't--everything that builds us up and everything that tears us down. I want to sip my drink and know that you are, sitting on your couch among piles of laundry and a house in desperate need of cleaning like mine, sipping one with me. I don't care if it's water or wine, gin or juice, but I want you to take a moment and say cheers to all of it because it makes you a GODDAMN rockstar.
Hey, at least we have each other. We'll meet here on that day (virtually, of course) and we'll drink together.
Date: March 7th, 2015
Time: After the kids go to bed.
Place: Your couch.
Dress: Hoodie and yoga pants (pants optional)
Happy Mail to:
27 Wellington Row
Saint John, NB
Grace and Kate's mom. (Shanell)